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Somebody help me off! 😛

Apr 26, 2015 2:18 PM

Back when I was a kid we use to spin in circles to see who could stay standing the longest. We even had piles of leaves to fall in. Then as a teenager we loved riding anything that went in circles: Ferris wheel, merry go round, spinning cups, roller coasters, etc. As I got older anything that went in circles or fast motions made me dizzy.

Ever since my dizzy spells started in February the episodes keep getting closer together. After insomnia the night before I got up off balance yesterday, but it went away by bedtime. I started on a walker and gradually went down from 2 to 1 cane to nothing by bedtime. Because of the insomnia I took 300mg of gabapentin and my regular meds & went to bed.

I slept from 10:30pm to 9:30am. When I got up I felt pretty good. As I bent over to pet the dog and stood back up... There it was again..dizziness! I went to eat breakfast and went to stand and there it was again. I grabbed my cane. Every time I move or turn my head; no spinning, just dizzy. I nearly fell twice even on one cane. Whenever I go to turn around and head another direction it's like being a kids after spinning in circles again! It's now 3:05 PM and I'm now on two canes! I stood up and just stood in place, and I could feel myself swaying: my husband could see it!

Out of curiosity I took my blood pressure laying, sitting & standing. It was real low (normal) laying down. When I sat up it went up to a high normal, except the heart rate which went to 100. Then when I stood up it went down again. I don't have bp or heart rate issues so I don't know if that's the normal response.

As I'm sitting here typing this I'm noticing my body doesn't have to move to make me dizzy... I can just move my eyes around the room. Somebody please turn off this ride!!!! 😲

Apr 26, 2015 2:22 PM

FlappysLady, you just gave me an idea. Have you ever been evaluated for postural hypotension? I'm not a medical person, but it seems like your symptoms might fit that description. It might be something to check into.

Apr 26, 2015 3:41 PM

Flappsy, That sounds like a very unnerving situation. You never know when you are going to get dizzy spells. Does it happen when you are over tired or exhausted?? Does it always start off after you bend to feed or pet the dog. Have you noticed any plugged feelings in your ear(s)? If you have inflammation there from the TMJ and your ear is inflamed, it could have something to do with that. There are just too many factors to figure it out definitively without the assistance of the doctor.. I am glad that the Gabapentin works for you and takes the trembling aways. You'll be in my prayers.

Apr 26, 2015 9:10 PM

I am currently spinning (not actually just feel like it) because I took gabapentin 2 hours ago and am not in bed yet. Well I am laying in my sons bed getting him to sleep. Gabapentin seriously makes me dizzy. I only stay on it because I have noticed less intensity in my constant headache.
I think POTS is something to look into. But also it could just be a side effect from one or combination of your many meds.

Apr 26, 2015 9:33 PM

Amanda, I don't know about whether they've tested or not. But I've passed out once and they DX it as orthostatic hypotension. After my cardio workup late January, when they found mitral ref and left ventricular low ejection fraction rate, the cardiologist put me on Imdur (angina) & aspirin. He said he wanted my bp/hr higher than it had been being.

AlwayZ, I don't have plugged ears and my TMJ has calmed way down, with my splint. I have noticed bending over for anything, even tying my shoes can trigger it. So does turning my head to the side or turning my body around to head in another direction, or even turning to look at traffic before pulling out. The gabapentin only calms the tremors temporarily and it doesn't help pain... Only make me sleepy.

Aliya, what is pots again? I've got a suspicion my meds are aggravating my imbalance & dizziness, but I've had both a long time. Usually not together or as severe. This is why the neurologist wants me to go to mayo clinic.

I return to my pain specialist tomorrow, after not seeing him for 15 months. He's not going to be happy about all the meds that have been added since he saw me last! But he pretty good about looking for counter active meds and stuff like that. I just hope I can drive tomorrow! Goodnight to all & may sweet peaceful sleep come your way! 🙏🌼

Apr 26, 2015 11:46 PM

A tilt table test is a real easy test ask about it.

Apr 27, 2015 7:07 AM

Thanks LMB. I'll ask when I see the doc.

Apr 27, 2015 7:42 AM

Got out of bed this morning and when I started moving the dizziness returned! 😥 Have passion specialist appt this morn but when get home I'm staying in bed...ugh! Feel nauseated today with mvmt. 😲

Apr 27, 2015 9:01 AM

I'm sorry Flappys, I hope relief comes soon!

Apr 27, 2015 11:14 AM

I'm sorry that you are having this horrible dizziness.. I know how nauseated it can make you when the room starts spinning. I hope that the rest of this day is peaceful and that your world stops spinning around. Feel better and I will be praying for you.

Apr 27, 2015 11:50 AM

I'm sorry your havering this dizziness issues now I can only speak from experience here be carful when you walk turn your head and walk we all need you better And are praying for you

Apr 27, 2015 1:42 PM

Thanks everyone! I'm trying to move all my body slowly. I feel like I wasted my time at the pain specialist appt. After asking medication questions and about my new problems (thyroid, sjogrens, tremors, dizzy, etc), he asked, "so what can I do for you? what do you expect from me?" I was caught off guard by his tone and the question. I told him the Ortho referred me back for pain control of the back and neck, and I wondered if he would (1) do more nerve blocks, (2) prescribe tens unit & (3) prescribe the ointment for my neck/back he gave me last time. He said no to injx & tens unit, " until they get these nerve issues figured out, and no on the ointment because Voltaren was just as good." (Not what he told me when he wrote it before). He then instructed me to come off the Tramadol and he gave me hydrocodone Rx. He also said they shouldn't be giving me the Tizanidine more than once a day. Why do I feel like I wasted my time?

Apr 27, 2015 9:22 PM

I am soooo tired of being dizzy. If I bend over or squat down, when I come back up I get dizzy. If I'm walking and turn a corner into another room, dizzy. If I turn my head side to side, especially while walking instead of looking straight ahead...dizzy. If I close my eyes (ie showering my hair)...dizzy. I really think its something in my ear(s) or brain, in relation to movements. Taking meclizine tonight, and tomorrow too if I get up and it starts again. Makes me think of the oldies song, "I'm so dizzy my head is spinning. Like a Whirlpool it never ends..."

Apr 27, 2015 9:23 PM

I take curious if he gave a reason about the Tizanidine? I take it 4 x day with 2 pills at my bedtime dose.

Apr 27, 2015 9:31 PM

He said its only suppose to be 1x a day but didn't explain why. When I filled the Rx the paperwork said its sometimes given for MS. I do know its a muscle relaxer. I'm not at all happy with his lackadaisical attitude, and judgment of the other doctors treatments, nor his wanting to put me on a heavy pain narcotic. He know my long allergy history with various pain meds. There's already so few available for me that if I go on one daily, what's left for emergency or surgery? My husband isn't happy about it either, or the Tizanidine comment.

Apr 27, 2015 9:40 PM

I use it as a muscle relaxer. Wish it worked better... still have very tight muscles. I am also on a lot of other meds including very strong narcotic pain meds. I still have constant pain at a 7-8 on the pain scale. 😭

Apr 27, 2015 9:44 PM

The ER gave it for the tremors and the neurologist renewed it. I usually take Parafon Forte for muscle relaxers. Ask your doc about it. Sometimes it take a full 24 hours but its pretty good at relaxing spasms & cramps. Much better than flexeril for me!

Apr 28, 2015 12:41 PM

Sounds like a very odd meeting with your pain doc. Especially since you have been so happy with him and trust him in the past. I can see the reluctance to start injections before the dizziness issues are resolved I guess but the TENS? The attitude is most dissapointing though. I wonder if he was feeling a bit frustrated with all the changes and impute since he last saw you with no consult and just doesn't want to do the cleanup wants you to go see someone else or maybe it was his day or something that had nothing to do with you but you got the brunt. Not saying that's right or even ok for a doctor, especially a pain doctor but it happens to everyone and when you don't see him regularly it's hard to know, recover the relationship or just call him on it. If you do know him well enough maybe calling him on it would be good, can it hurt? Tell him I was looking forward to this appointment because you are so good at...but after yesterday...do you not want to be part of my team?
On the dizzy stuff, it does sound like it could be medication related are you well hydrated? Sometimes meds affect hydration and combined with other side effects... The other thing you might pay attention to is your breathing many things can effect that without you realizing and some of the symptoms you are having particularly the position change stuff can be helped or caused by breathing. Take some slow deep breaths when the dizziness comes on and see if it helps at all. Lastly for ideas is some sort of inner ear thing contributing. I'm sure they have looked at that and I might try some EOs on it myself to see if it helped but I also have some to try so it's easier for me. But worth checking into. Still medication seems like the most likely culprit or a combo of things including meds and hydration. Narcotic pain meds and muscle relaxers can have real affect on breathing changes.

Apr 28, 2015 12:43 PM

Oh I forgot on the TENS you can purchase them inexpensively on line and they may not have all the bells and whistles but work just as well as those that do. In case you want to look into it. Seems like a great idea especially if you know it works for you.

Apr 28, 2015 6:13 PM

Thanks Lymie. You made some good suggestions. I just came from the pharmacy and talked a long time with the doc about all my meds. Considering all I'm currently on, she said its possible the gabapentin is causing &/or exacerbating my dizzy spells. She suggested calling the prescribind doc &/or coming off to see if I improve.

As for adding the new Rx of Hydrocodone/Acetaminophen, and considering my medical issues & 2 meds it conflicts with, she said it will exacerbate my bowel & bladder problems as well as adding to the dizziness. She said its up to me what I do but if it were her she wouldn't take it.

Apr 28, 2015 10:33 PM

It would be much better if they gave you just the narcotic without the acetaminophen for sure especially with so many other meds. That way if you really need the little extra boost you just take acetaminophen on its own and you aren't always adding the problems it can contribute. The hydrocodone will also contribute to binding you up but on its own not as bad and while it can cause some dizziness at first once you have taken it s couple of times your body usually adjusts and it isn't a constant side affect as long as the dose is right and you have true pain. It's always been my understanding that the purer the narcotic the safer and less likely to conflict with other meds. In fact odd as it may sound according to both my pain doc and the high risk pregnancy doc (long time ago but still applies) they are the only truly safe medications while your pregnant. My pain meds where the only thing they had no worries about other than monitoring the amount the last few weeks in particular to make sure the baby wasn't born dependent but even that was less of a concern because of myevel of pain and the purity of the med. I still went off completely and just suffered even though they didn't want me to do that feeling it was worse but that's a different story. It all was fine by the way. Anyway my point being that it sounds surprising to me that the pharmacist would say any of your meds conflict with the pain pills but 2 of them? Unless it's the acetaminophen that's conflicting. Still that's considered pretty safe and parable with other meds I think. Controlling your pain as best you can is really important to your health as well as quality of life so don't be quick to make that the compromise.

Apr 30, 2015 12:02 AM

Flappsy, The Zanaflex can be used in doses up to 32mg per day which is 2 4mg pills 4 times a day. That is what I am currently taking. I don't take them that way all the time, Sometimes I take only 16mg a day. which is 1 pill 4x a day but the max allowable is 32mg. Also, if you want to try using a TENS unit, you don't need the doctor to provide you a prescription for it any longer. You can go to Walmart, Walgreens, Target and a number of any other places and you can just buy one. You can even look on line and get any number of different ones from cheap, easy to use ones all the way up to the really strong, more complex ones. So, you don't have to count on him for that. As far as the medication goes, I don't understand why he took you off the Tramadol if it has been working for you. Hydrocodone is for pain but I hope for your sake that it works better for you than the Tramadol and you get more pain relief. I'm sorry if my post is all over the place, I'm very tired and a bit off tonight. I wish all of you a peaceful and pleasant night, sweet dreams and less pain. You're all in my prayers

Apr 30, 2015 10:46 AM

Lucky for me I have enough tramadol to last until I see the pain doc. I've decided to not take the narcotic until I see him and can talk to him again. Coming off the gabapentin (self trial) has reduced the dizziness, back to pure gabapentin stages... I can function better and not as mobility challenger. Although I've nearly fallen twice yesterday and this morning... Just veered sideways out of nowhere, as usual. If he gets mad and dismisses me then I'll just let my PCP continue to write the tramadol. I've got to much going on to change any doctors right now, so I'm trying to leave what I can alone until after I met with the disability lawyer and go to court, and go to Mayo for the imbalance and mobility issues.

Apr 30, 2015 10:47 AM

Pure gabapentin stages = pre gabapentin stages!

Apr 30, 2015 10:59 AM

Flappsy, you are the prime example of what we all need to be.... Our own advocates!!! We are the ones who know our own bodies.. better than any doctor could ever hope to. They go by medical "standards" but alot of what we suffer is NOT standard and mostly unexplainable. Instead of expanding their realm of thinking many prefer to think that we are either mentally ill, drug seeking or just plain old hypochondriacs. I have been my own advocate for many years and there have been many doctors where I felt I virtually had to drill what was happening into their heads to make them listen. I give you alot of credit because many would be afraid to be dismissed and who knows, the next doctor could be the one who can help you far beyond any other doctor before him or her. I hope you get the results you need... You are, as always, in my prayers.

Apr 30, 2015 4:33 PM

Thanks AlwayZ! I feel everything happens for a reason. 🙏🌼

Apr 30, 2015 5:11 PM

FlappysLady, What was your blood pressure in those positions if you don't mind sharing? Your blood pressure is always lower when you lay down but it is a matter of how low. I was curious how low yours get. I thought it was interesting if I am correct that your blood pressure gets lower when you stand up. That doesn't sound right. What they have been doing at the doctors office, they are waiting like one or two minutes before taking the blood pressure. One told me the other day to think calm thoughts. I thought that was impractical. I thought you should think whatever you normally think.

I hope you can get this under control. I hate to hear this is happening to you. I worry that you may have a fall. Please let me know how this situation develops. I will keep you in my prayers. as you said you will keep me in yours. Maybe some extra caffeine may help in the meantime. Take care as best as you can.

Apr 30, 2015 9:13 PM

Profiler, they've taken me off all caffeine. My systolic runs between 103-123 diastolic 68-94, and heart rate as low as 68, but normally 78-92. The only time I've ever passed out I was sick and at the urgent care. I got a trip to the hospital via ambulance. I had a severe URI and they said the mucinex-d made my bp drop.

Apr 30, 2015 9:15 PM

PS... We were at the grocery store over an hour tonight. My tremors started before we got home and I stumbled twice, nearly falling. It scared me and another lady. 🙏🌼

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